Who knows best…

Insurance is a blessing and a curse in my life.  I’m grateful to have coverage, but so frustrated a the antiquated system of step therapy that they industry still holds valid. I’ve written before about suffering for 7 years before finding a biologic drug that made me feel somewhat human again.  Why?  Because I had to “fail” the drugs deemed by my insurance to be “safer”. (read For those who have been rejected and I preexist therefore I am for more on this topic.) In reality, the drug companies that made the drugs that were “safer” actually provided the benefits plan manager company with bigger rebates for putting their drugs on higher tier levels.  So convenient, right?

Recently, Whoopi Goldberg was hospitalized for double pneumonia and sepsis.  Truly life-threatening stuff.  She talks about how her insurance didn’t want to to use the machine her doctor recommended.  My guess is that her insurance didn’t want to pay for the item recommended due to price.  If there is a cheaper alternative, they will push for that. Watch below:


Now Whoopi is lucky enough to be financially able to purchase what her insurance would not cover. Most of us are not.  She is, however, right about the fact that we, as patients, must advocate for ourselves.  I have amazing doctors whom I trust completely.  Any issues I have had with my healthcare have stemmed from my insurance company rejecting what my doctors have prescribed for me.  Now I understand, that insurance companies are a business and they need to make a profit to survive. These companies swear other options are deemed “safer” as per research.  I haven’t seen that research.  I have seen price differences, so I tend to believe that as more of a factor in their rejection.  In my case I had to “fail” on cheaper treatments before what I needed could be covered. I also understand that doctors are courted by pharmaceutical companies to get them to push their products…..but at the end of the day, I will always side with a doctor who knows me.  So when insurance rejects what my doctor deems medically necessary, I have to question:

  • Does the insurance company want me to stay sicker longer? To make more money? (seems like it)
  • Is it about the bottom line or do they have real research indicating that the options recommended by my doctor are not “safe”? (seems like they do not)
  • How is it that a doctor, whom I have never met, can deem what is “medically appropriate” when my own doctor can not?  (seriously, does that make sense to anyone?)
  • Does “Do No Harm” apply to insurance coverage?

Last year, we learned that Aetna didn’t even have doctor’s looking at medical requests.  They used nurses who automatically denied services based on criteria.  It’s a money game.  My life is not a game and neither is my health.

So Whoopi is right.  We must advocate for what we need. Earlier today, I saw Savvy Cooperative   share this meme:  (click pink words for link to site)53807523_848123422191873_3590626804446003200_n

I’m leaving it big because it is just that important.  We, the patients, are experts in our diseases.  We must continue to push for a positive change in healthcare coverage.  Our voices are important and we must work together with our doctors to make a difference in our health decisions.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

7 thoughts on “Who knows best…

  1. Step therapy is such a killer in many different ways. I live on one black and white thing.

    Appeal, appeal, appeal appeal.

    and when they deny the last time,


    Liked by 1 person

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